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paraganglioma

spegs2
Posts: 3
Joined: Aug 2009

hi. i am very new here. i was recently diagnosed w/ paraganglioma.i underwent surgery on 7/31/09 to remove what we all thought was a very bad canerous thyroid. the cancer attacked my vocal cords,trachea,esophagus and knocked out 2 of my parathyroid glands,along with of course my thyroid. it was over 4 inches long.it was sent out to be tested and came back as paraganglioma. my dr. didn't beleive it so he sent it out again. now that we are sure what it is ,i'm having difficulty finding any kind of info about it. i do know that it usually attacks the carotid artery and adrenal glands but so i have none of that. nobody knows why it settled for my thyroid. i am going to have a full body cat scan and mri tomorrow to see if it is anywhere else in my body and to make sure my dr. got it all;next week getting fitted for my mask and probably start external radiation the week after that.i probably don't have to say how scared i am of all of this. i am only 44 and always thought my biggest medical problem would be getting diabetis after 40.if anyone can help me,please do and if you need anymore info,i will try to answer the best i can.thanks in advance for any help given.

mrmcd4206
Posts: 4
Joined: Aug 2009

Welcome to the club, I don't think there are many of us. I am being treated at M.D. Anderson and they are considered to be the #1 cancer center in the world by many. I left there Tuesday and they even admitted that they never hardly see paraganglioma patients. Apparantly it is very rare. I found out about a month ago that I had it. I am 43. I have tumors all over my torso, they think it originated in my abodmen, it is in bones, soft tissue and organs. I start chemo next week CyVADIC. I have read where people have lived for years with metastic paraganglioma. Sounds like yours might have been found earlier, I pray that it was. But don't panic if after the CT scan they find it in other areas, that is common. I am also hoping to find others with it but the most info we have been able to find is on here. My doc is sending me some info on paraganglioma and when I receive it I would be glad to share it with you. Dr said much of the info you get online is innacurate. I was told that basically they either remove it and/or then hold it at bay with radiation or chemo and as long as the tumors are not growing, you live.
Good luck and God bless you.

spegs2
Posts: 3
Joined: Aug 2009

i'm sorry i haven't been back to this board in awhile and i didn't think anyone would answer my posts. all the other sites i am on,i have been greatly ignored. i went to my endocrinologist last week and i am the 1st case he has had in his 25yrs in medicine.i am only 1 of 24 and 1 of 2 where this cancer settled in the thyroid.when i asked why and how i got this he couldn't be sure. he thinks that maybe i got the gene for this in the womb and it settled in the larynx area. don't know what woke it up or why. he wants to do genetic testing on family(my kids,my sister and brother,maybe thier families).feels that this could be genetic and having a marker would help.my scans all came back ok. i do have fluid in the thyroid area and swollen lymph nodes but everybody feels it is due to the surgery.getting fitted for my radiation mask was no walk in the park where my emotions were concerned. i bascially lost it and it took the nurses about 20 mins. to calm me down.go for my radiation pictures on wednesday and hopefully start external rad. on the 14th of this month.i would love any info you have on this. you are right about the intenet. everything is in medical terms not layman terms and it is hard to understand. i don't know if anything is right or wrong just know that it is hard to find.
i am not a very religious person anymore but i have gone back to praying. i will keep you in my thoughts and prayers. good luck.

gtghawaii
Posts: 1
Joined: Sep 2009

Hi I was diagnosed with multiple head and neck paraganglioma in April along with thyroid cancer. I was told my tumors are inoperable so the only way to treat it is radiation. I've just completed 6 weeks of radiation which was no picnic. The mask is the worst. If I could give you some advice I would tell you to get an rx for ativan for at least the first few times you have to use the mask. I'm not claustrophobic and even I freaked out a few times. You can get some valuable information on the internet but you will need to learn medical jargon as only studies by reputable institutions should be trusted. The NIH has abstracts of many publications on paraganglioma. Also, there is a support group for people with pheochromocytoma/paraganglioma. It has alot of real information from patients that have been in your shoes. Here's the address: http://pheochromocytomasupportboard.yuku.com/

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